Finding My True Hope My Adventures at Stanford Medicine X

This is the fourth of a series of blog posts in which I will recount my adventures at Stanfords Medicine X, Conference: An experience which has changed my life, and I will not soon forget. :-) 

Patients learn to develop a strong voice. We have to... There are a lot of other voices, and interests, competing to be heard, and some, outright wanting to talk right over us. So, often times, a patient rises up above... and becomes an advocate: one who learns, and becomes an expert in their condition, as well as teaches others to self empower themselves, and keep going. As a part of that, it follows that the advocate will also seek to change their environment, change minds, and change the system as a whole. In that way, were like a computer virus, really. We will never stop until weve re-written it all.  

Despite this same mission, advocacy comes with different voices, and we all get to choose that voice. I suppose... 

Though, when you have lost someone you love to chronic illness, I dont think you have much of a choice in what your voice will be. If youve worn gloves to help prevent infection for your fathers in-home dialysis treatments... then, well... you no longer wear gloves much, if at all, when it comes to advocating for his needs, or the needs of someone else to follow in his journey. 

This might make us seem a little emotional, a little "Type A personality," a little pushy, a little obsessed, and perhaps... a little ANGRY. 

So, I dont want my dear readers to assume the worst from my Day 2, at Medicine X, either about myself, or about the conference. The reality is that my exchange on Day 2 is what makes Medicine X so unique, and wonderful, and freeing. Why, you ask? Why is someone talking down at me such a freeing thing? 

Well, the answer should be self evident: because I was allowed to talk back. Yes, I, THE patient... was allowed to have a conversation, to contest or ute, and to make a point. And for as much as I love other conferences, youre not going to find that at a TED talk. 

You dont need anyone to talk AT you -- youre an adult, and not a child. Youre a being with as much critical thinking, and life experience, as anyone else holding a different type of educational background, or expertise. Honestly, there wouldnt even be any medicine without you... for YOU are the patient. And throughout MedX there were all sorts of folks expressing their various concerns, and input -- from Susannah Foxs now famous Thats my research, and thats not how I chose to interpret my data, to your regular advocate questioning potential overquantification and privacy issues, to well, my now famous comment. 

Medicine X is not a place for people to be perfect -- everyone will have their biases, or their ignorance, or their differences of opinion or data interpretation. This is in no way a bad lection of the people who organize Medicine X, or of any of the participants, speakers, or guests, really. Nor is it a bad thing, at all. Medicine X is a place to have a CONVERSATION... and conversations bring outcomes, and education. Which brings me to... 

Day 3: The Doctors of Tomorrow... Today 

"Physicians are no longer the sole gatekeepers of validated health information ... The role of providers is evolving almost as quickly as technology. Value is no longer just knowing the right answers, but asking the right questions. And specifically, asking the right questions at the right time, the right place, to get the desired outcomes ... We are witnessing the evolution of value from content to context." -- Bassam Kadry, MD, Kadry Foundation, Stanford University, on the process and the whys of looking for new startups, and emerging technologies.

One of the most precious things I took away from Medicine X is that there are also other types of advocates: clinician advocates. The people who provide you with medical care, also tired of the state of affairs of their industry, and wanting to change their OWN landscape. Clinicians who understand that they are often, patients themselves. Or moms. Or voices for change, seeking to change the minds and views of their fellow peers, and embrace the new face of medical care. Doctors who understand that they no longer hold a monopoly on medical data.

Yes, thats right. 

Just like you and I... people who want to see change happen in how medical data is dealt with, how people are handled, how we all benefit from the system, and how well we all LEARN and make decisions together -- there are many, many, invested clinicians out there, who want to work hard to change the system. (And many of them work in boards, and foundations, who make conferences such as Medicine X happen.)

In the beginning, I thought "well, Medicine X is a conference about technology, and the bettering of medicine and patient outreach through technology..." but I was wrong. You see, it isnt just that... Its a lot more than that. Medicine X is a REAL coming together of PEOPLE: patients, clinicians, researchers, academicians, innovators, programmers and silicon valley entrepreneurs, investors, etc. People with various hats, who make a giant think tank (and without all the noise in the middle from all the bureaucratic machines), and embracing their most creative self, seek to DO something about the problems... WITH technology. Thats all it is. Thinking outside the box, with the new tools we have... and some cool music, and lights. :-) 

And it was so much fun! 

There were many sessions, some very hands on, and some going on at the same time in separate rooms, and I kind of wish I could have cloned myself to go to all of them. But hey, thats the beauty of technology, right? I learned about some of them through peoples tweets, or through peoples blogs... or through videos. Couldnt have done that as efficiently in 2002. 

My mind was reshed and renewed with the beauty of other peoples minds, and ideas... and it will be, for years to come, thanks to livestream. (If you havent caught on, I have linked every "Day" subheading" to its corresponding livestream link.) 

I love an analogy put forth by Esther Dyson (who spoke to me, and about my little comment, at Med X --  and it was quite an honor, really...) in which she discusses the breaking up of AT&T by the government. In essence, when AT&T was broken up, it really didnt fix the problem -- it only created a handful of other telephone companies, with (arguably) similar power. Instead, what really brought these companies to their knees was, what? NEW TECHNOLOGY. The wireless phone. Or otherwise, changing the rules. You take away their monopoly of data, and you get to redo the system. 

Itll be much the same with the medical industry. When we get together, and embrace the tools before us -- and how we tackle medical care and patient approaches -- we will get to rebuild that WHOLE puzzle, the way we wanted to from the beginning. The future is now, really. Its inevitable. 

... And in case you want to know, the speaker who I addressed with my little comment was very receptive, and very polite. I am sure he will choose his methods more wisely, next time. (No, he was not an evil troll. Please forgive him. I have.) 

So... if I had to sum up my time at Med X, I could tell you that: 

• I was a lost villager... 
• Who found herself accepted for her self quantification... 
• And hence, found her patient voice and courage, 
• Leading to a true HOPE in her advocacy efforts.

I will try to share more, as I have time, on all the various technologies I learned. Maybe even arm wrestle someone into a guest blog post, or something. :-) But I want to personally thank everyone... for taking the time to read through my various blog posts, and ramblings. My life at Med X observations, if you would.  

I may be the angry woman who writes about diabetes, but you folks make me the advocate that I am. I am indebted to all of you, and the wonderful people who gave me the opportunity of a lifetime to be a part of something big, at an institution such as Stanford University.

I will not... not ever... not soon. Never forget. ;-) 

People who exercise regularly are better at creative thinking

People who exercise regularly are better at creative thinking. This is the outcome of research by Leiden cognitive psychologist Lorenza Colato. She published an article on this subject in the scientific magazine Frontiers in Human Neuroscience.

Taking a stroll

We know that authors like Søren Kierkegaard, Henry James en Thomas Mann used to take a stroll before they sat down behind their writing desk. Apparently, this helped them to get new ideas and insights. But is it possible to prove scientifically that physical exercise makes creative thinking easier?

Divergent and convergent

To find this out, Colzato investigated whether regular exercise may promote the two main ingredients of creativity: divergent thinking and convergent thinking. Divergent thinking means to think up as many solutions as possible for a certain problem. Convergent thinking leads to one single correct solution for a given problem.

Thinking tasks

The psychologist gave thinking tasks to two groups of test persons: people who do physical exercise at least four times a week -- i.e. cycling -- and people who do not exercise on a regular basis. The first assignment was a so-called alternate uses test, in which the participants had to note down all the possible uses for a pen. This was followed by a remote associates task: the test persons were presented with three non-related words, like time, hair and stretch, and had to come up with the common link, which in this case was long.

Healthy body = sound mind

On the remote associates task, people from the group of frequent exercisers appeared to outperform those who did not exercise regularly. Colzato: We think that phsysical movement is good for the ability to think flexibly, but only if the body is used to being active. Otherwise a large part of the energy intended for creative thinking goes to the movement itself. Colzato believes that these results support the famous classical idea of a sound mind in a healthy body: Exercising on a regular basis may thus act as a cognitive enhancer promoting creativity in inexpensive and healthy ways.

Retail Clinics for Chronic Conditions Like Asthma Hypertension Lipids and Diabetes Mellitus A Look At the Value Proposition

Is there a business model in there?

To the delight of skeptics, pundits and bloggers everywhere, U.S. health orm continues to follow its predicted trajectory: fiscal shortfalls are now biting the nominally "wealthy," the Feds arent about to admit that theyre in over their head on implementing their health insurance exchanges, opportunities for cronyism are increasing and the DMCB spouse is wondering why her supposedly expert-husband cant find health insurance for less than a thousand a month.

In the meantime, theres no sign that Washington DC will ease up on the "accomodative" money-printing presses that are feeding "QE Infinity."  Thats no problem, though, because Europe is reminding us that once the paper currency is undermined, selling gold is a handy way to quell grumpy voters and prop up the welfare state.

Yet, Clayton Christensen tells us a fix is at hand: much of health cares quality and costs travails, he says, can be solved by embracing the disruptive innovation of non-physician treatment of acute and chronic conditions.  His supporters are undoubtedly cheering Walgreens recent decision to to have its 330 Take Care Clinics add hypertension, diabetes, high cholesterol and asthma care to its portfolio of nurse practitioner services.

After reading the usual retail clinic policy tomes both for ("access to care") and against ("health care balkanization" plus "missed diagnoses"), the Disease Management Care Blog isnt convinced that Walgreens decision is such a slam dunk.

Thats because these clinics business proposition is less about innovation and more about being a loss leader that increases retail pharmacy foot-traffic. In fact, offering free retail clinic services has been tried. The premise is that the retail customer-patients will stop by the pharmacy window for new drugs and, while theyre at it, renew those other high margin prescriptions.  If they pick up some diapers and nail polish while making their way to the front of the store, all the better.

While that certainly sounds good, retail clinics are not a build-it-and-they-will-come cash machine.  Recall that CVS had to pull the plug on its retail clinics several years ago.  Foot traffic didnt materialize and the supposed loss leader turned into a money pit. 

The good news for Walgreens is that they have Jeffrey Kang in their corner.  Prior to this, he led health insurer CIGNAs disease management initiatives. He undoubtedly understands retail, population-based outcomes and care coordination. If anyone can pull this off, he can.

The DMCBs conclusions?

It wont be easy. While Walgreens we-accept-all-insurance plans-VISA-Mastercard-and-American Express foray into primary care might work, it could also fail. Large health care systems use their primary care providers to feed their high margin and still-profitable specialty care services.  On the other side, small physician-owned practices are learning that hustling, high service standards, attention to overhead, accurate billing, patient mix and ancillaries can be profitable. Walgreens has neither. It remains to be seen whether this publicly owned companys bottom line will be aided by salaried NPs chasing pharmaceuticals narrowing margins.

Speaking of margins, the DMCB wonders if Walgreens will use its clinics to steer patients toward favored formularies or aid rebate and market share agreements. Could they also use and eventually monetize the Big Data like Target to further the companys business interests? If any one knows, please contact the DMCB.

Commoditization?  The DMCB thinks so and its not alone. Over time, the professionals staffing these clinics may find primary care is more complex and that they and their patients deserve better.

Ease of Exit? For who? Given that this is ultimately a business, it would be corporate malfeasance if Walgreens didnt have an exit strategy. Unfortunately, one companys exit could be another patients abandonment. Thats a real risk for the patients who come to count on Walgreens for their longitudinal care.

Patient Centered Medical Home Threat... or Friend?  The DMCB doesnt think so. If the medical home offers the value that its advocates say, savvy health care consumers will be able to vote with their feet. If the PCMH falters, it wont be because of Walgreens; in fact, the threat of competition may force help medical homes be more efficient.  In the meantime, medical homes should treat retail clinics like a community resource and er (or outsource) appropriate patients for routine health care. Why not?

Finding My Patient Voice My Adventures At Stanford Medicine X

This is the third of a series of blog posts in which I will recount my adventures at Stanfords Medicine X, Conference: An experience which has changed my life, and I will not soon forget. :-) 

Friday had come and gone with a massive amount of information, stories, and knew technologies featured in a relatively small amount of time. To be honest, Im still dissecting a lot of the information, and Im grateful for the live-streams, and videos, which I can always use as a reference.

Im also grateful for the dignity of finding ones bearings. Once we find those bearings, we regain a certain sense of confidence in ourselves, and situations, without which we may falter momentarily.  Finding my bearings came in the form of chit chatting throughout the day with others (encouraged by having to QR scan badges, and introduce ourselves), and by way of having dinner every evening with new friends. It was the validation I needed, really. A validation that comes from others who arent just similar to you, in their struggles, but who also laugh at your jokes, and are probably just as irreverent as you! I made some great friendships I wont soon forget. I felt human... an empowered adult, in her own right, without pretense, instead of an awkward child, sitting at the grown-up table.

Day 2:  Patient Dignity

Okay, so they didnt call it that. They just called it "Day 2." But "Day 2" was ALL about patient dignity, in my mind... or well, the indignities patients have had to suffer for the sake of getting much needed medical treatment for themselves, and their loved ones. 

Being a patient with chronic illness often leaves you feeling like cattle, simply going through a machine where you have no face, no back story... no humanity: just a being going through the system, the motions, the things put in place to achieve an outcome, a quota, or a financial goal, etc. And oftentimes, it matters not how well off you are, who you are, how famous you are... to be reduced to nothing. 

Meet some of the folks who fought back:

Michael Graves

Mr. Graves is an American architect, and Professor of Architecture at Princeton. You might not immediately know who he is, but hes more often known and identified for his creative designs for Target stores. I love Michael Graves. Heck, I have an alarm clock by him that I *adore.* Ive had that thing for 10 years. Its easy to program, very intuitive, and with two separate alarms, it has allowed me to keep ever changing, weird sleep schedules. Best of all, its beautiful to behold. 

But I digress... Michael Graves is an immensely talented human being. A designer, and an artist, in his own right. An optimist, and humorist. He was a person going about his life when chronic illness came striking at his door... In 2003, he became ill with a virus that spread to his spine, and left him paralyzed from the waist down. He recounts his initial symptoms, and his horrific experiences at the hospitals where he received emergency, and therapeutic services. It was his very traumatic, and dehumanizing experiences that gave him insight and a new passion to redesign the hospital room, and create bacterial resistant, patient-intuitive furniture... I could recount his story, but I dont think Id do it enough justice... so you owe yourself the 40 minutes or so to watch his video below, complete with pictures of some of these rooms, and the work hes doing.

Most notably, you can detect a hint of sadness in Graves account -- the sort of sadness of the self realization of not just his own vulnerability, of being at the mercy of someone else... and with little resources to make it through the day, but of others vulnerabilities, as well. At one point, Mr. Graves recounts how CBS was interviewing him when he was in one of the therapy rooms, and they asked him "Michael, what do you think of this room?" to which he replied "Its far too ugly for me to die here." 

Regina Holliday

I cant watch her story without crying. I just cant. Probably one of the most passionate speakers at Medicine X, Regina Holliday is just a beautiful soul. Regina is Artist in Residence for Stanford Medicine X, and she uses her paintings to express the reality of the health care system, the need for clarity, communication, and accessibility to data and patient records, as well as the injustices and indignities suffered by the patient... including her own grieving process, and her own indignities. Regina speaks creatively, and passionately about patients rights, and healthcare reform, and you can see she has invested much of herself in this fight through her national Walking Gallery project.

"You must look at the human face to determine what to do next ... "You must have patient participation in data and access, or you will never get the true story of care."

We must couple peoples data with their stories, and never forget, or give up.

Most telling is the story of Regina pleading with her husbands doctor for his data, wanting desperately to know what was wrong with him... but being belittled, and dehumanized for doing so. "I dont like people that research online ... Im the one with the medical degree." The picture she painted for that one event reflects a thousand emotions of one moment in time... a thousand emotions of desperation, trepidation, and ego. A thousand emotions we have probably felt, as patients, at one moment or another... but like scolded children, may feel a certain pang of shame to recount.

How do we change this reality? We write letters, we speak up, we stand up... we get engaged. We dont need partnership FOR, but WITH.

You must take us as we are... for we will never, ever keep quiet. We will blog it, twitter it, shout it from the rooftops... 

The Crux of Patient Centered Emerging Technologies

Interspersed with all these patient stories, Medicine X had also presented a diverse array of start ups, ideas, visions for the future, etc, for tackling confusing every day health tasks, or complex medical problems or processes. Whether it be shopping for your groceries (with USDA based guidelines, of course... something I will never use as a low carber), applications to help patients get in touch with clinicians at the wee hours of the morning, gadgets to help quantify ones quality of sleep (something I definitely want to use) or ones vitals during exercise, or applications to help simplify the potentially embarrassing scenarios of taking a urinary or fecal incontinence history... even online gaming communities to help scientists solve the puzzles of RNA sequence folding. Medicine X showcased it all.

They also discussed various obstacles to technology advancement, such as getting governments and current clinicians on board, the issues presented by HIPAA as well as personal privacy concerns, the realisticness of expectations on the patient (will many of us really want to self quantify to some of the levels seen, and how well will that go over with feelings of exhaustion, guilt, etc.), and of course... accountability. Getting patients to actually DO, and ACT upon the new information gained.

This last one is a big concern in patient advocacy, as well as in the medical industry... but it is where we can enter a sort of murky territory: how far do we help the patient, without patronizing them, or minimizing their disease? I was a bit annoyed to see that some of the innovators focused on obesity and diabetes (generalized for the audience, without explanation of types) as the example diseases for whatever initiative was presented. One of the presenters (on Day 3) went as far as calling type 2 diabetes the plague of humanity (never mind that he could of stood to lose about 40-50 lbs himself, and therefore heeded his own warnings.) 

I dont want to be a real negative bitch here... but theres really nothing more dehumanizing than someone calling your illness with which you have to live day in, and day out, as the plague of humanity. Whatever shall I do? Shall I wear a D scarlet letter on my sweater? Shall I hide in the closet? Shall I find ways to hide the fact that Polycystic Ovarian Syndrome keeps me very overweight, and that my weight yo-yos off and on, despite best efforts, and low carbing? I wonder... 

Among other pet peeves, one speaker simplified diabetes as something that they proved could be easily prevented -- even though the patients participating in his initiative already had pre-diabetes (and most likely a 40-50% beta cell loss), completely (of course, and probably out of ignorance) ignoring the whole questions of delaying versus preventing, and remission versus cure. All big topics I cant being to cover here... but suffice to say that despite lifestyle choices, many still go right on to developing diabetes, so lifestyle choices really only help us REDUCE risk of any illness; they have not, in our history as people, ever inoculated ANYONE against ANY illness... and then advocates like me have a very hard time bringing peace of mind, and healing, to people who were told they were in the clear. At the end of the day, we ALL need to have a healthier lifestyle -- not just diabetics. 

But, probably the worst offender, one innovator began his speech discussing type 1 diabetes... immediately jumping into scary statistics about diabetes (which vary greatly, depending on who you ask -- and were for type 2, not type 1) and intermixing those statistics with obesity statistics (which is really not 100% correlated to diabetes, otherwise all obese people would be diabetic, and is a disease in and of itself). To top off his confusing non sequiturs, he then went on to make jokes about why people in Great Britain were so overweight, and with diabetes, "so if youve ever had a British breakfast, youll understand," and ended his session of explaining why we need data, and more data... because we dont want to live in a world where obesity and diabetes are prevalent. Really? Honestly, its not that disease is something to be wanted... but the  benefit of having access to data is not really summed into a war against obesity and diabetes, it is summed into patient empowerment and action toward their conditions. THAT is what he should have said. Diabetes does not define me, but it is my REALITY, and as innovators, scientists, clinicians, persons engaged with patients... you had better damn well respect my reality... for when you dont do so, that is an indignity you heap upon me. 

You had better work on
your bedside manner NOW. :) 

And the funny thing of it is that I liked their initiatives! I really did! I liked their rationales, and their analogies... their applications. I *want* to support them... but they forgot my dignity. They forgot I am more than data. I am a FACE behind the data. 

So, at the end of Day 2 of Medicine X... I found my patient voice. And I thank them for that.

I found my voice, my bearings, and my dignity... and I got up, and I spoke out. Yes, on the microphone. Yes, I brought unwanted attention on myself. But, I thought "If I say nothing, now, I dont deserve to be a blogger... I dont deserve to claim I am angry about these things... I dont deserve to be an advocate... and I didnt start my blog to play nice." My apologies to those who paid to have me there.

The last few minutes of Day 2... I ended my day, with my knees shaking, my emotions on my sleeve, my heart rate through the roof, my courage being tested, and reminding the world, with a steady voice... that I am not a fat blob, having English breakfasts, who gave herself diabetes. I AM A HUMAN, AND I HAVE DIGNITY. I am NOT the plague of humanity.

I didnt expect people to get up and clap. I didnt expect all the attention, and comments, and support Ive gotten since. I only went there to learn, and listen... not to make myself "famous," somehow. (Or infamous, really...) But I just said what I had to say. Id probably do it again, too.

Is there some diabetes that is preventable? You know... I dont think anyone FULLY knows the answer to that. BUT SO WHAT? Does it mean I no longer deserve dignity if I do get it? If I "fail" to prevent it? Should I now be excommunicated from the population at large? Should I be made as an example to others? Should I be spoken of as a plague? As an unwanted thing in the world? 

Well, heres Michael Graves, and Regina Holliday... 

YOUR ARGUMENT IS INVALID. 

Waking up at Early Morning Make Us Happier

Habit of waking up early is very beneficial for not only physical but also mental health. Research to prove it to the experts. Analysis of the scientists from the University of Toronto Canada concluded, those who get up early in general have better health conditions. People who get up earlier also feel happier life than sleeping late because they are more adaptable to the schedule of daily activities.

According to researchers, they often wake up late and prefers activities at night are more likely to experience a "social jet lag". It is a condition where a persons body clock becomes out of synch with social activities. On the other hand, the "morning people" proved to be more refreshed, alert, happier and more motivated to face challenges, but also increased immunity.

As published in the journal Emotion, researchers found that most people tend to start leaving "night habits" such as his youth and became a morning routine wake up as they age. Renee Biss, the research leader, said that this discovery proves for the first time that the elderly have increased the feeling of happiness as the habit of getting up that early.

In this study, there were 435 adults aged 17 to 38 years compared with 300 people aged 59 to 79 years. Both groups were asked to fill out questionnaires about the emotional state, health quality and time to favorite activities.

The study results show, before the age of 60 years, most respondents in the category of "morning person". Less than 10 percent of young respondents included in this type. With age, these statistics are subject to change, which is less than seven percent of the population still has a habit of sleeping late.

"What is most interesting that we found was the tendency of respondents aged adults to get up early to have contributed to a better mood than young adults. People also claim to be happier in the morning than the evening, regardless of whether they are young or old. And Our research indicates that the tendency to get up earlier as you age may have emotional benefits. One night may be more susceptible to social jet lag, which means their biological clock out of synch premises social hour, "said Biss, Ph.D student of Department of Psychology, University of Toronto.

Article source : Waking up at Early Morning Make Us Happier

Health at work could it work better

How often have you or your colleagues been off work sick in the last year?

Most of us will have been off at some point for one reason or another - be it with the kind of cold or mild flu that lays us low for a day or two.

Thankfully much less common is the need for long-term sickness absence. And an article in the Telegraph recently shows that, while not as common as the odd day or two off ill here and there, its still a pretty considerable expense - with long term sickness absence being estimated at a whopping £3.1 billion yearly cost to the private sector.

However, the picture isnt quite as bad as it may seem at first sight. Sickness absence as a whole is less than it has been at times in the past. According to this release by the UK Press Association, 178 million working days were lost to sickness in 1993 compared to 131 million in 2011, this is based on official figres from the National office for Statistics.

There are various means by which businesses can help to minimise sickness absence generally - these can include some measures such as the following

• providing an employee assistance program
• promoting health and wellbeing within the organisation
• draw up and put into practice an occupational health scheme
• provide private healthcare insurance for staff

For more info on sickness absence management, check out the CIPD website (Chartered Institute for Personnel and Development) - and theres also some good online resources from the Health & Safety Executive and the governments Business Link site.

Blurry eyes at the Age of Dusk

Increasing age, generally make eye function is reduced. Eyes that once can see clearly now become blurred, often not helped even use glasses. Bright color was slowly fading. If it happens, the threat of cataracts is in sight.

In addition to blurred vision and the colors look faded, another symptom of cataract is excessive glare when exposed to light, can not see well at night, and double vision on an object.

Cataracts usually occur in the elderly over 60 years. This disease is a direct implication of the aging process. But with changing lifestyles, plural cataract found in those aged about 45 years.

Effect of smoking, diabetes, accidents, inflammation of the eye, or the use of certain drugs can trigger cataracts in middle-age group.

Cataracts can also be found in infants. Approximately 0.4 percent of babies born had congenital cataracts caused by heredity, chromosomal abnormalities, presence of metabolic disease, to the use of certain drugs during pregnancy or childbirth.